In honor of the annual awareness day, World IBD Day, I’m sharing five invisible aspects of my life with ulcerative colitis. This year’s theme is “Making the invisible visible,” so I thought I’d launch this series by sharing my top invisible extraintestinal manifestation: joint pain.
Joint Pain: An Invisible Extraintestinal Manifestation
One thing that a stranger wouldn’t know about me just by looking at me is that I deal with autoimmune joint pain. This is called an extraintestinal manifestation because it’s an IBD-related symptom that doesn’t involve my intestines.
Two years ago, I noticed that my right index finger was puffy, swollen, and discolored. It was a little bit tender, too.
My First Joint Pain “Diagnosis”
In April 2017, I went to my general doctor because, at the time, I had no idea it was related to my IBD.
The doctor took a brief look at it, and said, “Yup, you hit it on the wall when you were sleeping.”
I was shocked. I know I’m not a doctor, but I understand enough about my body to know that hitting it on something wouldn’t cause it to look or feel like this!
However, I let it go because I figured it was nothing too serious, and it wasn’t preventing me from doing anything.
Fast forward two years later, and it’s gotten worse and has spread to my pinky finger. I feel random aches in other joints now, too, including my elbows, shoulders, and knees.
Getting My Arthritis Diagnosis
It’s May 2019 as I’m writing this, and I’m working with another doctor now. (He suppressed a laugh when I told him what the doctor had said two years ago).
In the last few months, I’ve done X-rays and blood work and everything came back normal.
Until…
I did an additional blood test a few weeks ago; it screens for something called HLA B27. In short, it’s an antigen that, if positive, is oftentimes associated with a reactive arthritis (AKA an autoimmune, IBD-related arthritis called enteropathic arthritis.
The doctor’s office sent me a letter with my results: It reads, “Your results show positive. We will review this next visit.”
It’s interesting how having an autoimmune disease or two rewires your brain. I’m not sad, bitter, or fearful about this news. I’m actually relieved. I smiled when I read the letter. It means after two years, we’re finally getting somewhere.
The point of all this is that IBD is much more than an intestinal disease. It’s an invisible illness with sneaky, stealthy symptoms that no one would notice unless I decide to share them.
And I choose to share my story because
AWARENESS > FUNDING > RESEARCH > CURES